Well I guess it's hello to all.
I am a totally deaf mum to 2 children, a son with aspergers diagnosed at 8 years old and a daughter with cfs diagnosed age 11. Both home schooled.
I have multiple health problems and recently diagnosed with ASD at 50 years of age!
My husband works part time and is a carer for all three of us. Anyone else in a similar position?
Regards to all
Well and truly touching story, reading it alone I learned much about perserverance, adaptability, good humour/humility, solidarity and support. I feel your story also exemplifies just how important understanding is--for you guys to survive as a family as well how isolating and spirit crushing that can be when society and the medical profession doesn't, I'm glad you did find services that understood in the end. From someone with much less faith, hats off to you, your partner and children sound lovely all the best with life, your new diagnosis and your health
There is an interesting article at www.autismspeaks.org/.../mental-health-awareness-month-autism-and-bipolar-disorder
It suggests that "However, we believe that bipolar disorder is mistakenly over-diagnosed in those with autism. In part this is because some of their symptoms can overlap"
Is it worth re-evaluating your bipolar diagnosis in the light of your recent diagnosis of ASD?
Personally speaking, I have often experienced the highs of solving a hard problem and then the real lows of stress and depression where I can't get the world to see my point of view. I've recently been diagnosed with Asperger's (at 56) and I can now better understand this cycle of insight and despair that accompanied the undiagnosed aspie's point of view.
Hi Elan
Yes I can see why many become despondent as I did after seeing the psychiatrist who basically dismissed me & simply thought it was an anger management issue & that there would be a 2 year waiting time to see a psychologist for support!! I was was already quite ill by then & even worse afterwards. Undoubtedly I plummeted soon after & yes I felt very much like giving up at the time, all this had a negative impact on me, my husband and my children who were young at the time.
Those days were horrendous & very rocky especially in our marriage despite my husband doing his level best to understand & support me & my complex needs in addition to the stressea of raising an asperger son. I take my hat off to him & love him dearly for sticking by us all. No mean feat as many marriages break up with far less. Few men would deal with what he's had to cope with. He reduced his hours to part time to care for us all, which in itself is stressful through obvious financial constraints as a result. However, home schooling, having my husband's unwavering support, support from subsequent brilliant medical professionals, interpreters & most of all my faith has got is to where we are today. We are a very close knit family as a result & have a very strong marriage having been through so much together.
We we have learnt through many trials & errors what works best for our aspie son & found those strategies worked for me too. Due to our disabilities relationship between our son & I was fraught at best. However as we all did our best to apply new strategies find what worked fr all of us, life became much calmer, easier. Now our son & I are very close, also our daughter & I. To say that it's been a very difficult journey for her is an understatement, especially when she was too young to understand.
Our daughter has learnt to support her brother & know when not to wind him up, when to explain things, when to be patience which isn't always easy as she has her own needs. She supports & helps him discreetly while out with peers, most of the time. She has such compassion and understanding for people far beyond her years both as a result of her experiences and the type of person she is. She has grown to be a very fine young lady with wisdom & emotional intelligence far beyond her years.
My husband and has taught our son much about banter, emotional intelligence, social cues, subtleties and the like that asperger & ASD people struggle with, that he's learnt how to compensate & adapt well.in many ways that's a positive thing, the difficulty arises when people don't understand and disbelieve he has difficulties & struggles. Which in turn means they won't cut him as much slack as some one with a broken leg, & will push until he reacts then he's the one that pays the price for days & weeks, months, years & we all do. Does that make any sense?
As parents we have to deal with our son differently as you would a non aspie child, which makes us appear as soft parents not discipling our child when he kicks off. We have had to learn to ignore these negative attitudes & disparaging remarks & continue to do things our way not even sure if it was the right way? Now he's grown into a fine young man compensating & adapting well for the most part, with most non the wiser except for those closest to him unless certain stressful situations arise, then his struggles would become more apparent.
Things are still very challenging & exhausting that doesn't change, but we have learnt to adapt as a family as we went for many years with little or no support & were much isolated! However we now have the right support from professionals which helps a lot. One cannot undetestimate the value these services provide or the devastation & isolation felt without such services in place. We have experienced the reality of both. Thankfully there's been much support from children's services from the outset for the most part since our son's diagnosis at 8 years of age.
There still exists plenty of the "now"s you refer to, that's ongoing & yes complex especially with my competing needs and "now"! That being said, I have mellowed somewhat over 50 years with regards to "now"!! It helps much to have a sense of humour, something my husband is very good at & has taught the children well.. There's hope for me yet, I'm still in the process of barmy!
Of course all this has taken a toll on our physical health & I have many physical health issues as well to contend with. However, life is a journey and we, I am currently working through each one the best I can. So that I can be the best I possibly can in my circumstances.
Kind regards
Thank you. Appreciate that & hope others find it inspiring too.
I would imagine there will be few with a similar set if complex circumstances, hence it will be of interest to find out what their experience/journey has been.
kind regards
Because I know of examples of disabilities running in families though it can be isolating I'm sure others can relate, still a unique situation and set up, I'm still absorbing all that you've said. I'm at least glad that despite the uphill climb you managed to hang in there and recieve the support you needed. It's so easy for ASD traits to be missed and dismissed and many become despondant and give up altogether. I'm still thinking with everyone having such unique needs in your household how on earth does everyone adapt to one another, I feel balmy when the cat so much as wants to play *now* right *now* let alone when he has more complicated demands.
Hi Elan
It's indeed most unique hence wondering if there's anyone else in a similar position?
Well after many years of struggling without knowing why, it was a relief & explains a lot. Much was blamed on my deafness. While this creates it's own set of issues, I was aware that many of my deaf peers only had issues pertaining to deafness & did not experience the struggles I had. Facial expressions, eye contact, idioms were all normal to them. While I compensated & adapted much by copying over the years, much of what's percieved as normal was lost to me. However I managed to hide behind my deafness & get away with a lot!
While I knew there was a reason for my struggles, I didn't know why until my husband pointed out after many years of marriage that our asperger son & I are so much alike! He also found an article on bipolar when I was really ill & said that was me. Sadly a consultant at the time dismissed both suggestions of bipolar and asperger, which suffice to say the result of that consultation was not pretty & I was banned from the very department that was supposed to help people like me. Thankfully much has changed since & the department have been very supportive. They've been instrumental in my diagnoses, bipolar, auditory process disorder & ASD. I think that will suffice.
Thankfully my my husband found the John Denmark center in Manchester that deals with deaf people. I owe them a huge debt, plus my husband, family, gp, subsequent cpn & consultant who diagnosed me with bipolar. This was the start of my long journey to recovery & recent diagnosis of ASD.
Now I can understand, so can the children, family & close friends. I can at last celebrate my differences & accept myself for who I am, rather than feeling a constant failure for struggling to do what comes naturally for most. It exhausts me to constantly adapt, compensate, to fit in. Not everyone with ASD wants to fit in & adapt, but I did & think perhaps that's more true of some women with ASD?
I was at boarding school from 5 years of age for deaf children & at a grammar school from 11 having passed 11+. So a unique set up & background I think, but likely made me who I am today & helped much in learning to compensate albeit with struggles.
Thanks for your reply & for asking.
kind regards
