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29

November


Learning to Live With Life! Saturday November 29, 2014

My son is studying the book "About A Boy" at school. My son is Aspergers a form of autism and even though we have watched the film over and over as he finds visual learning works better for him than reading, he still has not grasped the fact that Marcus one of the main characters in this story is also autistic, and that both are having very similar experiences in their lives.

As a mum, I am finding this story quite difficult to handle, because you see I'm Fiona, Marcus's mum. I'm the depressed women from this story, it's like looking at my own life reflected on the big screen for everyone to see.

Not suicidal like Fiona in the film/book thank goodness, but at the bottom of that black pit of despair, desperately trying to crawl out of the hole, only to be pushed straight back down again, on a regular basis.

I'm glad that my son doesn't see me in Fiona as he has enough to cope with, and I have pondered over the school's motives in making him study this book. I did ask the question and was told it was part of the curriculum, and that the other option was "Of Mice and Men" both equally way over the top of my son's comprehension.

So I've decided to use it as a positive, in that my son can see the bullying that Marcus endures, and my son can then talk to me about how he felt when he was bullied, through Marcus. He can learn empathy for his mum, something my son is only just starting to show.

Can you imagine 14 years of your child's life with no hugs or kisses from them, it breaks my heart, but I'm starting to turn this around, and have to say have had more hugs since starting with this story. He can also see how brave Marcus was to sing in public and that he was able to make friends, as I'm sure my son will do one day. (Another aspect that breaks my heart). So from something I first considered insensitive, it now does seem to be having a positive side to it.

But now it has become very obvious to me how lost I am, and that it has been so long now, that I don't remember actually when I did feel like me, or felt real happiness. So the facts are, that not only do I feel I lost my son at the time of diagnosis, but also myself. Life has become a constant battle for his needs, and I have totally forgotten about myself.

Recently I was forced to make a stand as it has got to the point where my mental health is seriously starting to suffer. So I decided to quit my job, take some time out to try and reassess my life. To look at who can and is willing to support me with the massive responsibilities that I have held and juggled for the last 14 years. To come to terms with the fact that I am not super woman and that it's okay for me to admit that to the world, but more importantly myself.

That I now need to focus more on getting myself well, starting with plenty of rest. So please excuse me I'm off for a nap.

Helen
A Moodscope member.


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Comments

Anonymous Sat, Nov 29th 2014 @ 8:01am

Gosh Helen it's lovely to meet you.
My son is not diagnosed but I have read into Asperger's a fair amount in the last two years as I believe he is on that spectrum. My son has many traits although there are some that do not apply and so I hope I am not talking out of turn. I have found his care overwhelming and often find myself tearing my hair out as he takes centre stage again leaving my other two children in the sidelines. I also have depression and the mix is not pretty. First and foremost is YOU. Your oxygen mask goes on first or nobody else has a chance. I'm full of admiration that you have stopped the other job...the one you are doing is more than full time. I'm sending a warm hug from me to you. I'm blessed that my son does hug me and my heart splits when I imagine you not receiving that. Thank you for your post, I hope you will visit daily and lean on us. Much love from the room above the garage x.

Anonymous Sat, Nov 29th 2014 @ 8:31am

We are an autistic spectrum family. And know others. It can be so tough. But. Other - non-autistic - families have problems with their children that I would not want! Autistic spectrum people do continue to grow emotionally as they get older. We do find ways of being close. I hope you have friends to support you, and especially those in a similar situation. It's not that rare!

Lyn B.B. Sat, Nov 29th 2014 @ 9:03am

Dear Helen,
I was moved to read your story and just want to wish you luck, peace and some happiness for your soul. I am unexpectedly alone as my husband of 33 years walked out and now lives with a younger woman. It is so hard to adjust and my son was my rock for 3 years. I was so pleased for them when he and his girlfriend went away to travel last January and will not be back until approx. May next year. I know how cuddles are so important...I miss them dreadfully and hope you get more and more and your son improves. Take great care of yourself and ask a friend just to hug you...its a hard thing to ask for but the 'hugger' and the 'hugged' will feel better for it. Very best wishes Lyn x

Wendy Sat, Nov 29th 2014 @ 9:07am

Dear Helen & Anonymous too, I think ... yes, Anonymous is right ... you first because if the well runs dry, no-one gets any vital, life-giving water ... . Remember too, in all your strugglings every day, never to compare yourselves to others ... the "perfection" that is portrayed in many media areas, Facebook etc etc can make things so much worse for those of us whose lives are not perceived to be "perfect" ... but you, both of you, and your sons, and your families, are forging your own "perfection" ... your own love, and the best kind of love, the highest form of love, is a hard thing ... but you are doing it as you struggle each day ... wishing small blessings each day for you both and your families and the sure knowledge that not everyone will be able to appreciate just what it is that you do. You are very special. Blessings, Wendy xx

Sue Sat, Nov 29th 2014 @ 9:30am

It sounds as if you should have had a lot more support at the time of diagnosis to help you through that transition, but it's not too late. Are you in touch with your local NAS support group? If not, give them a call as you will find many other people there in a similar boat. I would also suggest contacting Gina Davies at The Gina Davies Autism Centre - she will be able to point you in the right direction.

Anonymous Sat, Nov 29th 2014 @ 9:31am

Dear Helen; my heart goes out to you; although I do not have first hand experience of an autistic child, I am full of admiration for your wisdom and your courage in facing upto your own grief; be gentle with yourself. Frankie

Anonymous Sat, Nov 29th 2014 @ 9:37am

You are such a brave and courageous person and your strength is amazing. I am full of admiration for you. Sharing your story is a powerful tool and shows that you are beginning to take care of YOU. As others have said, it is so important to keep that well from running dry. I send you hugs regularly, I know you can't feel them and they don't fill your void but just know that they are there for you. You inspire me and enrich my life and I am so appreciative of you in my life. Love and hugs Rosie xxx

Anonymous Sat, Nov 29th 2014 @ 4:32pm

I agree with all the above comments. Your story is similar to mine. Thank you for your post.

Anonymous Sat, Nov 29th 2014 @ 4:46pm

It does get better Helen...and almost always begins when you decide to be human and not superhuman. I have an autistic son who is now 21. I did not learn to stand back and ask for help until this year. The people in my life assumed I was fine and that I needed no help as I maintained my ever cheery face to the world. Once I acknowledged needing help (I started a new job) it came from both places expected and unexpected. It was as if a community bloomed overnight with the intention of helping my son lead a more varied and fulfilling life. I am thrilled that a collateral effect was to make my life easier and my time with my son much more relaxed and rewarding. The universe provides once we open ourselves and acknowledge our vulnerability and humanity. Thank you for doing so with this community.

AJ Sat, Nov 29th 2014 @ 9:21pm

No hugs of my autistic son. Yeah, know that one. Helping him and watching him grow and mature and becoming his own man - priceless. Keep those rest periods up! And enjoy the ride!

Anonymous Sat, Nov 29th 2014 @ 11:01pm

I like your comment.

Sarah M Sat, Nov 29th 2014 @ 11:41pm

Than you for writing this. I watched that film today and thought ...blimey he's autistic and his mums like me!! Thing is I've watched it before ages ago and it didn't click...your journey has been a fabulously pioneering one and will continue to be so. Autism aware families are truly wild and wonderful and take many forms. I wish you a most brilliant voyage - and remember there is a huge flotilla out there to help you at every stage. Keep up the good work and most definitely the napping!! X

Helen Tedder Sun, Nov 30th 2014 @ 3:40pm

Hello Anonymous. Lovely to meet you too. Knowledge of the subject of Aspergers and Autism has helped me so much, and you too by the sound of things. So no way are you speaking out of turn. As mum's we have to be there for out kids. I only have one son, but through reading and observing know that my partner is on the spectrum too, undiagnosed and that conversation is a no no. It's taken him years to accept our son's condition. So I truly feel I have the responsibility of both of them. You say your son's siblings are sidelined, you can contact lots of groups who look at the needs of the siblings. Have you looked at the NAS website, you don't need to be formally diagnosed to access it. But I know what you mean about centre stage. Recently we bought a puppy for my son as I felt he needed more in his life, as well as a companion. It was tough the first few weeks with all the changes of routine, and my son for the first time in his life didn't have my full attention, but it has done him the world of good. It is teaching him empathy, responsibility, and communication skills, as everyone talks to us when out walking the dog. I'm so glad you get hugs and affection from your son. It's really tough living in a house hold without it, and it takes me all my time not to become bitter. So thank you for your warm hug, understanding and time. Bless you for reaching out to me. I have received 12 replies to my blog and it is wonderful to receive every ones best wishes right now. Christmas is a really tough time for me and I will read these more than once to keep me going over the next few weeks. Hugs and Angel Blessings to you to. Helen x

Helen Tedder Sun, Nov 30th 2014 @ 3:44pm

Hello Anonymous. Thank you for your reply, all the replies have been so positive and have given me a real boost. I hadn't thought about looking at non-autistic families and the problems they have, it is a different angle, and a true one. Unfortunately I have not had much support which is another contributing factor to my depression, but hopefully things will be turning around for me know that I'm putting myself and son first. Thank you again, and Angel Blessings to you and yours. Helen x

Helen Tedder Sun, Nov 30th 2014 @ 3:52pm

Hello Lyn, Thank you for your reply to my blog, I had 12 replies all wonderful and supportive, so bless you for yours it has given me a real boost. I'm sorry to hear about your husband and the pain he caused. I can totally understand your pain as I have been there in a previous relationship. I often look back at my life, at what I've endured, and know that it makes me a stronger person, and a gift to help others. However, a child and partner with Aspergers is the hardest road to travel, but I'm hopeful that the right help will come along and that he will get the best out of life that he can. The way I see it is, at least I will have done my best for him, and will continue to do so. I know next May seems a long time away, but it will soon be with us and your son will be back in your arms, full of wonderful stories, and adventures and cuddles galore. Will ask my friend for a hug next Monday, she gives real good ones. Angel Blessings to you Lyn, from Helen x

Helen Tedder Sun, Nov 30th 2014 @ 3:57pm

Hi Sue, thank you for taking the time to write, I had 12 replies and all wonderful, and supportive. No I had very little support at the time of diagnosis, and even my partner buried his head, so I truly have been on my own. The NAS have been involved in the last few weeks, and have given me lots to read. My son also has bowel problems and is under the hospital at the moment, which is taking all my time right now. But when I can I will look up the Gina Davies Centre, and thank you for the info, much appreciated. Bless you and your family. Helen x

Helen Tedder Sun, Nov 30th 2014 @ 3:58pm

Thank you Frankie for taking the time and trouble to reply. All the messages have been really encouraging and have given me a boost, so bless you.
Angel Blessings. Helen x

Helen Tedder Sun, Nov 30th 2014 @ 4:26pm

Hello Anonymous, Thank you for taking the time and trouble to reply to me. I know the path you speak of well. Isn't it strange how people assume that you are doing fine, when inside you are screaming for help with every cell of your being. Even when I've asked for help and support from those who you expect will help you, ie partner, parents, in-laws, and sister, they just don't see it, of offer. This adds to my depression because it hurts that I can't even go to those who are supposed to love us. But I won't dwell on that, it isn't helpful. I'm hopefully at the same crossroad that you speak of, with hopefully lots of agencies now getting involved to help. I remain optimistic at the moment, and still have faith I'm on the right road now, but still holding my breath because that's what the past has taught me. I'm so looking forward to being more relaxed and rewarding times with my son, and trust that the universe will this time give us the break we so long for. I'm inspired by your story and it truly give me hope for his and my future, so bless you for that gift. Thank You. Angel Blessings to you and yours. Helen xx

Helen Tedder Sun, Nov 30th 2014 @ 4:32pm

Bless you AJ. Hugs to you too. Yes I'm hoping that all the help that is being promised now will come to fruition, and that we will both benefit, and we will start to see some good times. We could do with some priceless moments now. Working on enjoying the ride. Angels Blessings to you and yours. Helen x

Helen Tedder Sun, Nov 30th 2014 @ 4:40pm

Hi Sara, yes it sort of hits home doesn't it ? As for Fiona the mum in the film, when I saw it again, I could see all the pain in her face, all the thoughts I've had in my own head, and totally understand the point of her wanting to escape. But as you say we have this journey, a pioneering one that will continue, and I thank you for your kind words and good wishes. I will keep napping, but not for too long as I might miss one of those special moments that come so rarely with autism. Angel Blessings to you and yours. Helen x

littlemissmenopause Sun, Nov 30th 2014 @ 5:24pm

Dear Helen. What a brave and sensible decision you made in quitting your job - I love and admire your trust in the universe . I hope you and your beautiful son get all the support you need and deserve. Good advice from AJ: 'enjoy the ride'...and the opportunities to put your feet up. Xxx

Helen Tedder Sun, Nov 30th 2014 @ 6:23pm

Hello Littlemissmenopause, Thank you for your kind words, they mean so much. Yes quitting my job was a very difficult decision for me as I've worked all my life, and have always been a conscientious worker, and I'm no quitter. Unfortunately my employers bullied me and put me through hell at a time when my father was in hospital and my son under the hospital with bowel problems too. I was at the bottom of the deepest hole, and they were the last straw for me. For the sake of my own health and my family I had to walk away. I do trust in the universal energies and that things happen for a reason. So I also decided to surrender, and put my put my faith in the universe and my Angels. Not the best time of year to do it either, but my head was fit to burst. I have recently been offered support after years of coping alone, and I'm holding on to this right now. I'm looking forward to a more positive 2015 and future, as well as seeing my beautiful son bloom. In between I will make sure my feet are up. Angels Blessings to you and yours. x x

Anonymous Sun, Nov 30th 2014 @ 10:44pm

Hi Helen, your blog meant alot to me, thank you so much. I am a mother to five, four teenagers, two of whom have Aspergers and complex needs, one of whom is really I'll at the moment, has been for some time and has to be away from home which breaks my heart. Their father has only just slightly accepted their diagnosis and it has been a hard road, and will, no doubt continue to be so, but I have to remember that there is much joy to be had in things it is easy to take for granted, a smile from my sad girl, hearing laughter round the dinner table. I work full time along with two auto immune diseases so took the decision to see my GP last week who signed me off - it means reduced money coming in but I get chance to rest my weary bones and more weary heart so worth it. I have only recently started reaching out and most people have been fantastic, particularly the NAS, whose advice is making the minefield that is the system an easier road to steer. So, Helen, I salute your bravery, your son is a lucky one, and I wish you and yours much peace and joy X

Helen Tedder Thu, Dec 4th 2014 @ 8:08pm

Hi Anonymous thank you for your reply. I'm always pleased to hear from people in the same situation, it helps me realise I'm not alone. But oh my goodness you have your hands full. It is made even harder when family are not fully on board with acceptance of the situation, because that itself becomes yet another battle, and one that you don't need. I agree about much joy, and have to remind myself that we have bad days, but good ones too. It's easier to remember the bad, and I'm trying to use CBT to help me with that one as it needs a reprogramming of my though patterns, not helped by not having time for my needs. Well done you for taking some time off from work, and I know what you mean about money, but sometimes health has to come first, don't you agree? Well done for reaching out too, I also have only just started banging loudly on doors instead of being polite and just getting on with it. So your salute to my bravery, right back at you, I think both our children have wonderful mums. Angel Blessing to you and yours. Helen x

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