As promised here is ‘part 2’ of your questions answered. I’ve tried to answer them all as honestly as I can. I’m already working on part 3! 😉 Enjoy. 🙂
Kay – What does it feel like before, during and after a meltdown? Do you feel any remorse/guilt for the things you’ve said or done?
This is an interesting question and one that will have quite a long answer so please bear with me. 🙂 It’s quite hard to put into words the feelings before a meltdown as 9 times out of 10 I don’t see it coming but the ones I do see coming are usually caused by a single event, such as being in a busy supermarket on a Saturday afternoon (!) The others tend to creep up on me and tend to be as a result of many single events all culminating in a meltdown. When in the grips of either meltdown I feel an intense feeling of being overwhelmed. Like I just cannot take anymore and if I were to stay in this environment then I might quite literally explode. I also experience very intense feelings of fear and panic, like everything is out of control, which make me even more anxious than the demand or event that actually triggered the meltdown in the first place. After an instant meltdown I feel embarrassed because I wasn’t able to keep a lid on things and stay in control. I hate the feeling of failure that follows because I couldn’t cope and I’ve had remove myself from a situation. I’m also left feeling physically and emotionally drained, like I’ve been awake and on the go for 2 days, which normally results in me needing to spend a day or 2 doing nothing but watching TV and sleeping. When it’s a built-up meltdown I feel all of the above but I also feel intense guilt and shame at my actions. You see when it’s a built-up meltdown I don’t normally see it coming and it catches me off guard and means that I often flip and lose my temper with Paul. I end up saying and doing things that I know erode our relationship more and more over time and it kills me that I hurt him but I just pray to God that he understands. I can be really vile and I hate it. Remorse and guilt are feelings that I know all too well – I hate hurting the people that I love. Meltdowns are one of the few times that I ever wish that I was “normal”. 😦 Thankfully though they are becoming less frequent and I’m getting better at pulling back once I’ve started in meltdown but sometimes I just simply can’t control it but perhaps with more time and practise I will. 🙂
Anne-marie – What has been helpful/supportive? Also friendships, do they get easier as you get older?
The short answer is love. The longer answer is the love and support I receive from Paul, my family and my friends. I couldn’t manage without it. In the dark periods I need to know that I am okay, that it is worth fighting and that I will be okay which I couldn’t do without this support. Just knowing that I have a group of people around me who don’t judge or hold a grudge is so important.
As far as friendships go, yes I do think that things are easier now I’m older, although like most people I still get my fingers burnt from time to time. I tend to trust people far too much from the outset rather than having them earn my trust and this, as I’m sure you can imagine, has led to my being taken advantage of. I like to think that one of my best qualities is that I’m extremely loyal. I have a great group of friends now, all of whom are PDA aware, and I think that’s the most important thing and which I’m ashamed to say was lacking from my friendships in the past due to my own preconceived ideas. I hid my diagnosis but I’m pleased to say that I don’t anymore. 😀
Kaz – I would like to know what was the most helpful thing for you as an adolescent that helped you make the transition to adulthood and what as parents we can do to make our kids lives a little easier?
For me I would have to say that what helped me the most was Ginny my outreach worker. She was provided by Social Services to spend time with me for 5hrs per week. I used to go to her little cottage and we would sing, play the piano and violin together, do crafts, cook, play cards and we also worked on fitting out a dolls house together. She was amazing and came into my life at just the right time. She helped me to see that it was okay and that life could be more than just a long list of negative and bad behaviours. I am still in contact with her to this day. 🙂 Another person whom I owe a big debt of gratitude to is my home tutor Lizzy, who I am also still in contact with. She made me feel safe and showed me that I could fit back into a school environment and do well. I don’t believe that without these ladies I would be half the person I am today even though when I met them neither one had ever heard of PDA before. They took the time to follow my lead, to learn from me and didn’t judge me too harshly. They gave my mum the break and support that she also needed and allowed me to grow and to navigate the rocky road from teens to adulthood.
I think that as parents it’s vital that you talk to your children, explain things as much as possible, talk about PDA with them and make time for yourselves too. Self-awareness is really the key to PDA – without it, the road of life is much harder to travel. 🙂
Stacey – What would your ideal partner be like? What’s the recipe for a sucessful marriage/relationship?
I’m very lucky as I can wholeheartedly say that I’m with my ideal partner. 🙂 Paul is amazingly supportive, although he is far from perfect and we do have our ups and downs like any other couple, he really is my rock. I don’t know where I would be without him. We met nearly 10 years ago on
Match.com and we just clicked. Suddenly it all made sense: this life. We are complete opposites but that’s what makes it work because what each other lacks the other has in abundance. 🙂 I’m not sure if there is a real recipe for a successful relationship but of course communication is vital and so is laughter. I truly believe that there is that ‘special someone’ out there for each and everyone of us, no matter what is in our past or what difficulties that we may or may not have. 🙂
Caroline – What is the most helpful things that can be done to maintain self-esteem? Is depression an issue, now or in the past?
For me self-esteem was completely lacking from my life until I met Paul, for a number of reasons really. 1. Men weren’t to be trusted, ever. 2. The damage that such a late diagnosis and mismanagement had had on me and 3. General issues arising from being overweight. Although I say it was completely lacking there were times when it was there in my teens but it was soon stripped away again when something went wrong, as it tended to do. I think that it’s vital to hear those 3 words: I love you. Sometimes in the midst of chaos it can be overlooked and forgotten about. I truly believe that self-esteem comes with self-awareness and self-understanding. I beg you, talk to your children.
Yes, I would say that depression has played its part in my life. I have often considered ending it all, I’ve self-harmed a lot over the years and I did once try to commit suicide. Thankfully I’m in a much happier place now than I have ever have been before and depression seems to be a thing of the past, touch wood. The urge to self-harm never really goes away and I still have to remind myself that I can’t when I’m feeling low. I think I’ve dealt with a lot of the ghosts from my past and put a lot of issues to bed once and for all. I think that helps – the past can be more damaging than the present. I wish I had the magic formula for this because I could make a fortune! I’ve just been incredibly lucky to have been blessed with an amazingly supportive partner, family and friends. Don’t get me wrong I’m not perfect and I still have days when I wake up and I can’t face whatever the world has in store for me today but I just have to keep going and ride those days out so that the good days can come.
Clayre – Is there anything that could of helped you more as a child? Also how have you dealt with issues like work, and have anymore serious behaviour issues arrisen?
For me there is only one answer to this and that is: early diagnosis. I sometimes wish that they had seen it sooner because perhaps I wouldn’t have as many issues as I do now and perhaps I wouldn’t have experienced some of the shit that I did but then, on the other hand, I wouldn’t be who I am now if I hadn’t have experienced what I did. I do think though, that no matter what the diagnosis, sooner is better than later. Support is vital too.
Work is something that I’ve never done, well not in the traditional sense of the word anyway. When I was younger I studied for a diploma in preschool practice, for which I had to work in a preschool 3 days a week, but I wasn’t able to cope with the demand to finish coursework so I had to give it up. That was when I was 16 and I haven’t worked since. I just can’t do it. I’ve tried – I’ve had a market stall twice, once selling my hand painted glass and the other selling my handmade cards, but I soon found that demand too much also and had to stop. There was a time in my life when I used to get angry at myself because I can’t work. I felt like a failure and that I wasn’t contributing anything to society. I’ve made my peace with all of that now though and I’m okay with it. I might not be able to ‘work’ but there are other ways I can contribute and feel like a valued member of society, like writing this blog and answering your questions. 🙂
If you have any questions then please feel free to message me. Peace. X
Read PART ONE now! 😀
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Hi, my 11 year old daughter has just got diagnosis of ASD. I think she has PDA. I do not know if I should pursue a diagnosis of PDA. With your life experience, do you think it is important that PDA is specified, or do you think a diagnosis of ASD will be sufficient to obtain support?
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Hello.
Personally speaking yes a diagnosis is vital but something is better than nothing. An actual diagnosis means that the correct support and guidance can be given. ASD strategies don’t normally work with PDA, in fact they often make it worse. Another plus for diagnosis is that it’s validation for you and your daughter – it isn’t all in your heads. Personally I would push for a correct and and accurate diagnosis. ‘ASD’ is worth the paper it’s printed on. It tell me nothing. It’s like saying you have an allergy but not what allergy. I hope this makes sense. X
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Brilliantly answered yet again hun xxx
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