True to Yourself

We first saw the paediatrician in September 2014, so although we didn’t get Oscar’s diagnosis until February this year, it’s been just over a year since the word and the possibility of Autism entered our lives.

I say Oscar’s diagnosis, and of course it is his, but in many ways it’s also ours. Ours as a family, mine as a mother.

I’ve been thinking about identity a lot lately. Being “who you are” or “who you want to be” and being “true to yourself” seem to be buzz words I see everywhere I go at the moment. And the idea is a nice one. Not pretending for the sake of others, living the life you were meant to or that you dreamt of. It’s all very noble. But what happens if the life you want and the one you’ve been thrust in to are two separate things?

Last year I was finally starting to feel happy in my own skin. I felt I was living the life I was meant to. Gradually the future had started to excite me and my confidence soared. I was the mother I wanted to be and I had visions of where we would go and what we would do, together and apart. And then the A bomb dropped into our lives and things haven’t been quite the same since.

I haven’t been that happy for a while now. First of all I thought it was shock, coming to terms and dealing with my ‘grief’ while carrying on. Then things started to happen. People and agencies came into our lives and support and paperwork and appointments and thoughts I never thought I’d need to have became everyday and it was a whirlwind. Yes, Autism was now part of our world, but we could learn and we could deal with that. Right? And then things just carried on, not quite as before but as everyday as they could be. But I didn’t start to feel any better. And eventually I realised in fact I had started to feel worse. Different, less devastated, but more all encompassing.

I spend so much energy getting through the day, some days I feel like a shell. Empty and drained. And then some days I’m feel like I’m getting it. Like I’m winning, like everything is OK again. And the next day it’s everything I have to get us out the door.

And I started to wonder why I feel so sad and I think I might have an idea. I am not the mother I thought I was going to be. And while I’m sure most of us can say the same (who really is living up to the ideal we had before and during pregnancy, really?), it’s proving harder to accept that than maybe I thought it’d would. Is this sadness down to not really knowing who I am?

I want to be true to myself, I just don’t know who that is any more. I am not the mother I thought I was. Because Oscar is not the child I thought he was.

I’m sure I’ll come to terms with it one day. I’ll accept that I am an SEN parent. That I will live my whole life with a disabled child. I’m just not sure when. And right now I don’t know how to.

Or perhaps I just don’t want to? Because that would be like admitting all this is real.

And then my heart just might break for good.

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Comments

  1. Lisa, Oscar is very very lucky to have such a sensitive, thoughtful Mum. What you perceive as weakness is really your strength.

  2. Lisa, I’m sorry you’re feeling this way. I remember when my son was diagnosed and it took a long time to deal with it, mostly because even though this bomb just went off in my life, life still kept happening and I remember that for awhile, I was just going through the motions. I knew I had to be strong for my son so I held everything in. I was in college at the time but had to take a semester off because of the doctor’s appointments and going through the process of transitioning him to a new pre-school that was more equipped to work with him. I then ended up leaving my job to stay home to take care of him and for an independent person like myself, with no school and no work to keep my busy mind occupied, I started dwelling on too many things. All the while dealing with my own diagnosis of PTSD. I look back and I don’t know how I got through it because some of it is a blur but I do know that even though things look bleak now, you will get through this. Things will get better and you will find yourself in all of this. These hard times are going to make you a stronger person and a better mother. You may not be the mother you want to be but you are becoming the mother your son needs you to be. Just keep the faith! You’ll get there. I’m rooting for you!

    • mrssavageangel says:

      Wow! I’d ask how did you get through that, but I know you did because you just do! What an amazing lady you are. Did you go back to college in the end. It does rather feel like he’s going to take up my whole thought space forever, which is a bit scary, especially when I have friends with children working on their careers. I know, I know I think about the future too much! Thank you so much for your support my love. It is much appreciated xx

      • You’re very welcome! I did go back to college and I earned two Associates and one Bachelor’s degree but earning them took me ten years because I had to take time off every so often to do what I needed to do for my son, then I had a second son but it was worth it to me because I showed my boys that no matter what life throws at you, if you have a dream, follow it to the best of your ability. I was able to follow my college dream and be a good mother, and get over my personal issues. Be proud of yourself. You are a good mother and your son will see it someday. I still think about my own future as I think about my son’s. He’s going to be in high school next year and I am already having transition meetings and being invited to look at various high schools. It’s a little daunting because I know I’m not ready and now I have to really start thinking beyond high school. Sometimes, if I think too much (which I tend to do sometimes) I get a little depressed because I don’t know how the world will treat him and if they will accept him but then I remind myself that the future isn’t here yet. I can only deal with the moments as they come. I can prepare myself but something I’ve learned being a parent of a special needs kid, you can never really prepare so just go with it. I hope this helps you. If you need to talk send me a message anytime. Have a great day!

  3. It must be really hard. You sound like you are strong though and you will find a way through. x

  4. ourlittleescapades says:

    Oh lovely this made me cry as I walk these same steps every day! Autism has consumed us/me/everything. Also something that stuck me as funny, not as in ha ha, but Ethan was also diagnosed in a February. February the 6th 2013, didn’t have to think twice about that date! I’m only just now starting to accept, as we look at Little E and wonder if we are going down the same path us her, that this is us. That has taken a long time, this coming from someone who ignored being pregnant as I was so scared what it could bring. I think it will always be an up and down journey but that is all part of it I suppose. Always here if you need me.

    Thanks for linking up with Small Steps Amazing Achievements :0)
    x

    • mrssavageangel says:

      Oh honey I’m so sorry , I didn’t mean to upset you! How funny that our guys were diagnosed almost exactly a year apart! It makes me so sad to think you spent your pregnancy so scared. Do you really think your youngest may be autistic? I never wanted more than one, but after O’s diagnosis, it made me 110% sure. I couldn’t risk it. And so yes, this is my life. I have no typically developing child to experience. Some days I think that’s for the best, some days it’s what breaks me up the most. Maybe you never fully ‘get over it’. Maybe it just gets easier to cope with? I hope one day I can not have regrets and sadness in the background, every time I look at my child. That would be nice. Thank you for being so sweet xxxx

  5. An autism diagnosis for your child is a huge thing, and dealing with the aftermath can leave you losing yourself in the daily grind of appointments, therapy etc. Inhabe seen this with my brother and sister in law when their little boy was diagnosed.
    You will eventually come through it, this I can promise you. X #sharewithme

  6. Lisa, your posts are just so wonderful, so raw, and so real! Some parents accept autism and the new life they are going to live immediately, others not so quickly! I love how honest you are about how hard it has been to accept all those dreams aren’t real and actually we have to make huge adjustments as parents to discover how we can be the best parent possible to a child that we love unconditionally but isn’t the person we thought they were going to be! I cannot wait to read more from you! Hopefully see you linking up to #spectrumsunday again this week xx

    • mrssavageangel says:

      Thank you so so much. Some days you think it’s all coming together and other days it seems like nothing will ever be the same again. But through all that you keep on. Because you have to. Thank you so much for hosting and see you on Sunday!

  7. ourlittleescapades says:

    I have no idea about Little E and I must admit when I realised Ethan was autistic I didn’t want anymore children. How could I bring another children into the world that needed so much support?! But I longed for a little girl, I wanted to know that fear hadn’t stopped me so that when I looked back on my life I had no ‘what if’ regrets. The autism guilt is bad enough right?! So we went ahead and let fate decide and I told myself I would have another boy that would also have autism. I couldn’t believe we were blessed with a girl, had three scans too. I wouldn’t believe them lol. Its only now I have stopped saying ‘I can’t believe we have a girl’. She has completed us and of course I’m scared about the possible autism but we are already living that. I don’t think I was meant to have an easy life ;0) x

  8. Oh my, this is such an honest post. You question your authenticity right now and here it is on the page. This is where you are right now. And I don’t think that there is anything wrong in feeling angry, sad, conflicted, complicated even. You have to give yourself the chance to mourn the dreams you had and then look at what parts of it you can rebuild into a new dream. Because you are a strong and amazing woman, and your son is blessed to have you. Thanks so much love for sharing on #AllAboutYou xx

  9. I am so sorry that you are feeling this way. Such an honest and brave post hunny. Somethings (so many things) are unanswered for you right now. Time will help, support will help and you will know who you are and he is again I promise that much. You are doing everything right and learning about it and getting help and support you both need and letting it out on your blog so you don’t bottle it up. Thank you so much for linking up to Share With Me. #sharewithme

    • mrssavageangel says:

      Thank you Jenny. You’re right about using my blog to get it out there – it’s when I try to pretend on my blog that I feel the worst! Honestly all the way Thank you for hosting!

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