Monday 4 January 2016

I don't know how you do it - from a mum of autistic and neurotypical kids

Hospital corridor

"I don't know how you do it." It's a phrase I've heard so many times.

Often it's preceded by "with respect". It's hard to know whether it's a compliment or a criticism. Do I look such a mess that it seems I'm only just coping? Or are people suggesting that they wouldn't want my kids?

The last time I heard this comment I was sat on my son's hospital bed. I was sharing stories with another parent whose disabled child was in for a similar procedure as ours. The parent was commenting on their recent school experience and their realisation that their child would not be going to a normal school. Inevitably with having two autistic boys in different settings, there was a discussion about coping with all the kids as we'd already established I also had a two year old daughter. "I don't know how you do it, with them all," they said.

I really don't see what I do as being any different to what any other mum would do if they were me. It's a struggle for all parents and the extra responsibilities or challenges that comes with helping an autistic child grow up is, yes a joy, but also sometimes a lot of hard work. Maybe it's just about what you are used to.

I've never had a child in hospital before. We'd been allowed to visit the unit before our visit and there was a great playroom should David want to play. David had no real clue what hospital was or why he as here.  We had attempted to explain using pictures, but to him it was just another building.

When it was David's turn to be taken into theatre, I picked him up and walked him to the prep room where they would put him under a general anaesthetic.  We all knew David would not understand what was happening and it would be too traumatic to try and give him anaesthetic by injection so the staff worked with us and planned to put him under with gas and then give him the injection after I left the room.

I knew he would struggle.

I sat on the gurney clamping my boy like a baby. It took three of us to hold him while he fought against the mask on his face. He still had his dummy in when the mask went on but I could hear him scream through it.

He struggled and the tears poured down his cheeks.

I guess he was a good fighter and took a bit longer to start to go out as they had started to check the machine when his eyes finally started to roll a little and his fists started to relax.

And as I saw my gorgeous little boy go all floppy and out I could barely hold myself together.

If I hadn't had the focus of getting a coffee as I had planned, I would have just wondered down the hall and burst into tears. The NHS staff were brilliant and very reassuring.

I had just about recovered when I was called to hold my wailing child as he slowly came out of the anaesthetic. He had no idea what had happened or why where he was.  Recovery took a little while. He cried and was obviously in pain from the procedure, bruised, uncomfortable and confused.

Eventually my brave boy started to pay more attention to Toy Story on the TV and a new toy but continued to feel drowsy and sore for a while.

I found it hard. It's something I've never had to do before.  But for David it was something else.  Yet he managed to get through the day and try and get through the next one.  It was hard to know what he was thinking.  Was he worried this might happen again?

The truth is we each cope as best we can and that will be the same for David as he grows.  And I'll be there beside him.  But I'm much better at coping with his regular autism related challenges than I was taking my child to hospital.

So to the parents, like my mum, whose children have to go to hospital and routinely have operations "I don't know how you do it." Maybe it's like I said, it's about what you are used to.

Links
Our blog - Are my children in need of someone better

9 comments:

  1. Hi there,
    As a new mom, I could only imagine the struggle to see your child go in and come out of anesthesia.

    I, too, have heard the phrase "I don't know how you do it". In my case, its related to breastfeeding, returning to work next week and intentions to pump while at work. My response, probably similar to yours, is "Its what's best for my baby and though it may be a struggle at times, I wouldn't do it any other way". I think people don't consider the many ways comments can be taken. I accept said comments with good intentions and take it as a boost to my mom-esteem that what I'm doing is right (and that I may hold supermom powers). ;) Take the comments, interpret them as positive, and give yourself a pat on the back. We all need a boost from time to time.

    Thank you for sharing with us! #TwinklyTuesday
    -Mama Curtiss

    ReplyDelete
  2. I love this post! I get that phrase daily too, sometimes, if I am honest I wonder myself. I have three young children, one happens to be autistic, but I don't necessarily see my challenges any different to the next mum with 3 children under 6! Thank you for linking up to #spectrumsunday lovely, really hope to see you there again this week xx

    ReplyDelete
  3. This is such a gorgeous post. I was almost in tears with the description of your little man. I hope he is all better and it's all been forgotten about now. I often get asked how I do it and it can get pretty annoying because I quite simply have to just do it...just like you do! Thanks for linking up with #TwinklyTuesday

    ReplyDelete
  4. Fabulous post and one that I can very much relate to. Your description of holding your son whilst he was put under anaesthetic is one that resonated with me - my eldest daughter has had several heart surgeries and other procedures requiring a general anaesthetic and that scene is one that I have lived through myself. It is so hard to stay strong for your child but you do it because you have to. I have people tell me that they couldn't do what I do as a heart mummy which is crazy. I do what I do because I have to, because I have no choice. Any other mother in my shoes would do pretty much the same because of their love for their child. And as you say, this is the life we become used to, these are the challenges our children bring us and as parents we rise to them (admittedly not always as well as we perhaps would like!). Thank you for sharing this.

    ReplyDelete
    Replies
    1. Honestly, I'm nearly close to tears again just reading how it 'resonates' with you. You are so right though. I can't think anyone would do anything less or more than I, because I do my best and what's needed. My boys need different schools so I'm a commuter. My boy doesn't talk so I learn sign language (http://rainbowsaretoobeautiful.blogspot.com/2015/11/freezing-during-frozen-songs-makaton-in.html).

      That said, I still think you are amazing. Maybe that's it. Maybe in fact we are all just amazing mums, because that's what mummies are.

      Thanks so much for commenting xxx

      Delete
  5. I hope all goes well with them. Xxx

    ReplyDelete
  6. In my experience, you just do it. You just do what you have to do. You don't think about it, you just get on with it don't you? Thanks for sending me the link to this post.My hardest moment have been seeing my kids in hospital and this with my youngest will certainly be a challenge because he experiences the world differently to the other two but I'll be there just like you were there for your lovely boy. xx

    ReplyDelete
    Replies
    1. Exactly. Take it as it comes... Because it comes whether you like it or not. I hope you don't have to wait to long for the appointment. Xxx

      Delete
  7. You just do it because you have no choice and because you trust the doctors to take care of your little ones. I had the 'I don't know know how you do it' too. I suppose people don't know what to say sometimes and it's the only thing they can think off. They probably think it won't upset you... Great post, off to share it xxThanks for tweeting me and I hope he is all good now

    ReplyDelete

I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

Have a look at our most recent posts:

Follow
@rainbowsaretoo facebook.com/rainbowsaretoobeautiful Ann H on Google + rainbowsaretoo pinterest rainbowsaretoobeautiful bloglovin Instagram rainbowsaretoobeautiful